A parent speaks: “Our child’s disease is OUR disease”

Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics covered in a special issue of Pediatrics, among other initiatives and trends. Justin Vandergrift was one of the speakers and his words were so compelling that I asked if we could publish them here.

e-Patient Dave: This post is about ImproveCareNow, which Susannah wrote about two years ago:

“…some very promising quality improvement work among pediatric gastroenterologists. If you’re not yet familiar with it, please see: ‘ImproveCareNow: The development of a pediatric inflammatory bowel disease improvement network’ … The really exciting piece for me is that ImproveCareNow is now adding online patient networks to their toolbox, as part of the Collaborative Chronic Care Network or C3N Project.”

As you read this, please think about our movement, in which “networked patients [and families] shift from being mere passengers to responsible drivers of their care.” What does Justin’s experience with ImproveCareNow teach us?______

Before relaying my thoughts and ideas, I wanted to share my story and ultimately why I am standing before you today.

My daughter Kathryn is 11 years old and will turn 12 this summer. She IS my reason for being here. Kathryn was diagnosed with Crohn’s disease in August 2011 shortly after her 10th birthday. She has endured changes to her body from steroids; countless procedures, XRAYS, scans and two surgeries. Her medication list is more than I can remember. Frankly, if I were in her shoes, at her age, I would cower in the corner hoping no one would see me. But somehow, through it all, Kathryn remains cheerful and greets life with warmth and enthusiasm. If she can face HER world with a smile – then I HAVE TO DO everything I can to help. Her strength inspires me and SHE IS the reason I am here.

All of the other parents here are living with their child’s disease on a daily basis. We face each day with hope and promise but also with an awareness of uncertainty. Along with Kathryn there are 16,000 kids at 52 ImproveCareNow centers living with Inflammatory Bowel Disease. I stand before you today, one of several parents, as a voice for these patients and their families.

WE ARE ALL here to be the voices of the voiceless – representing tens of thousands of chronically ill children.

The medical community is renowned for their acronyms, phrases and jargon to make explaining ideas easier. However in one case the simplification of a term detracts from its real meaning. This word is parent. Yes I am a parent – but in the end I am simply just a dad. ALL of us parents are simply a mom or dad with a common goal – WE JUST WANT OUR KIDS TO STOP HURTING!

We want the pain, tears and frustration to go away. There is so much life to live and we want to give our kids the highest quality of life possible. I am confident that every person in this room wants ALL of our Kathryns to stop hurting too.

Since ImproveCareNow began in 2007, the network has raised the remission rate for children with Inflammatory Bowel Disease from 50% to 77%.

With 16,000 patients at ImproveCareNow centers, this means 4,300 more kids that are feeling well, are fully active, and have no IBD symptoms.

My center, Levine Children’s, has been involved with ImproveCareNow for approximately three years. The benefits are overwhelming for such a short period of time.

– 93% of Levine’s IBD patients are off of prednisone,

– 85% have satisfactory nutritional status and

– 92% have satisfactory growth status.

Like many other IBD families, these statistics represent battles my family fights every single day. Seeing improvements in the data is one thing, but understanding the potential impact of these advances on my daughter’s life gives me hope. There is promise that she, and the thousands of other kids like her, can live a healthy, normal life with Crohn’s in the margins.

As a parent one the most interesting benefits of being a part of ImproveCareNow is the focus on truly involving parent partners. Each center is encouraged to have a parent partner as part of their Quality Improvement Team. Parent partners have the unique opportunity to help drive the changes made at hospitals and care centers, and watch how those changes impact the lives of our families and the next family who gets and IBD diagnosis. Our child’s disease is OUR disease; we live their ups and downs as if they are our own.

I was incredibly fortunate to have Levine to “buy into me.” Together we have accomplished more than I EVER thought possible. The support and acceptance of my care center is amazing and I am certain we have improved the quality of care for families in our area.

Because Crohn’s and ulcerative colitis are diseases of the GI tract, patients often suffer in silence. However, locally we’ve seen Levine’s patients open up and get involved with the IBD community. The Charlotte Take Steps Walk, a fundraising walk for the Crohn’s and Colitis Foundation of America, was held a few weeks ago with an estimated 1,500 walkers. Levine Children’s had the largest number of patient-inspired participants than any other facility at the walk. The IBD team at Levine has increased parent/patient engagement by creating a bi-monthly newsletter dedicated to education and put together care-kits for families admitted to the hospital.

Across the ImproveCareNow Network we’ve seen the acceleration of patient/parent engagement through a variety of revolutionary ideas. Some centers have created mentoring programs where newly diagnosed families are buddied up with a veteran family for support and to help them navigate their IBD journey. Others centers have regular outings where IBD patients can come together and interact as typical kids. One center has monthly meetings where IBD experts share information with patients and families about new advances in the field of pediatric IBD.

No matter what a center chooses to do to support patient engagement, the outcome is tremendous for the families. When Kathryn was diagnosed with Crohn’s disease my wife and I felt like islands. People heard my words as I described our life, but no one understood what the words meant. I remember that feeling of being completely scared and totally isolated. I remember watching my child suffer through the most horrifying pain. I remember the gut-wrenching feeling of utter helplessness as she up at me, with tear-filled hazel eyes and said ‘Daddy PLEASE make it stop’, as I realized there was simply nothing I could do.

But there is something I can do. Something every parent can do. We might not be able to help another parent take away their child’s pain, but we can be there to hear their cries, listen to their stories and understand.

Before closing I would like to pose four questions to you.

What would health care for chronically ill children look like if the ImproveCareNow model was universally adopted?

What could we accomplish by working together?

How much better could the lives of these children be?

And lastly and most importantly, what do we really have to lose?

In closing I just want to say, I’m Justin, Kathryn’s dad, and thank you for the commitment to making the lives of our children better.

Related

12 Comments

Justin
on July 19, 2013 at 10:50 am

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
~Margaret Mead

I appreciate your story and can totally relate! I hope you will continue to write and share so that others can learn and grow from your experiences, and that together we can all create the change we want to see.

Thank you for sharing your family and Kathryn’s story. I live and work in North Carolina. I am very familiar with the Quality Improvement program at Levine Children’s Hospital. Have you met and worked with Laura Noonan, MD? She is the director of the Center for Advancing Pediatric Excellence at Levine and a Senior Improvement Advisor for the Area Health Education Center (AHEC) in Charlotte.

A lot of the work that they do there is focused on educating the clinical care team on how to create a partnership with patients and families. The pediatric residents spend a lot of time learning about quality improvement and this is not found often in health systems.

We can accomplish a lot more effective and positive change in healthcare when we work together and listen. I think your story is a great example of how as healthcare professionals, rather than trying to push what we think you want, we really should be seeking out advice from people on the receiving end of the care we provide.

Thank you for being a advocate for your daughter and taking the time to participate as a patient representative!

Thank you for the comments. I would love to work with Dr. Laura Noonan. There are so many wonderful things happening at Levine, I would welcome the opportunity to help them. We can accomplish a lot by working together!

For those who aren’t familiar with ImproveCareNow, I just added a link at top to Susannah’s post here about it last year.

LOOK AT THE RESULTS the program has produced, WITH INTENSIVE PATIENT & FAMILY ENGAGEMENT. I’m not sure there’s a better testbed of participatory medicine anywhere in the world – if there is, I sure want to know about it!

Justin, you’re an inspiration. We all need to speak up to encourage the development of learning health systems that use data, knowledge sharing and collective action to improve how care is delivered and new discoveries are translated into action.

Justin- Thanks for sharing your awesome story! I’m a mom to a complex medical kiddo with other chronic conditions – I love the results you share about improvements made by the whole team approach. And I love that the progress is being shared across the country to help more kids! Thank you so much for all you do, my daughter doesn’t talk yet so I am her voice. Great job Justin!

Catherine:
Thank you for the note – It is daunting to be the voice for your child. The decisions we make can impact the rest of their lives. I wish you the best in your journey. Thank you again.
Justin

If anyone would like to show their support for the work of ImproveCareNow and other collaborative networks, you can make an expression of support at the campaign website we’ve put together – healthiertogether.org